Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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"What is next for Coyne of the Realm after Queen Mary University London releases PACE trial data?"

Discussion in 'General ME/CFS News' started by Dolphin, Sep 13, 2016.

  1. Dolphin

    Dolphin Senior Member

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    Valentijn, flybro, mango and 6 others like this.
  2. eafw

    eafw Senior Member

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    From the linked blog: "I will provide scientifically – and ethically- based arguments why the parents in the UK should consider not enrolling their children in the MAGENTA trial and why they should withdraw their children if they have already consented to their participation, until certain conditions are met."

    I think there could be good mileage and good publicity to be had from a #boycottMAGENTA campaign. Can be tied in not only to the PACE scandal but also things like the IOM report and the new research we have.

    ETA: from the linked Magenta proposal in the bmj

    "There is good evidence that graded exercise therapy is moderately effective in adults with CFS/ME ... 100 paediatric patients (8–17 years) with CFS/ME will be recruited from 3 specialist UK National Health Service (NHS) CFS/ME services (Bath, Cambridge and Newcastle)."

    Bath, Cambridge, Newcastle - why are you going along with this ?
     
    Last edited: Sep 14, 2016
    TiredSam, Hutan, Valentijn and 5 others like this.
  3. wastwater

    wastwater Senior Member

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    They must be treating it like depression
     
  4. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    If I were a parent with a child enrolled in the MAGENTA study I would withdraw from the study. The evidence is very strong that something is very wrong with these claims. At the very least, further studies should not proceed until the scientific debate can reach a definitive conclusion. This is particularly the case for any study involving children.

    I think Coyne is right to require open publishing to meet their own standards.
     
    Hutan, Ben H, Solstice and 1 other person like this.
  5. Ben H

    Ben H OMF Correspondent

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    My GP keeps offering to send me to the CFS service in Bath which is practically next door. Despite being currently bedbound and unable to get there, and also the slight issue that its all a load of dangerous twaddle as we all know.

    He uses the term 'evidence based medicine' without an iota of irony with regards to this service based on CBT/GET. It is absolutely infuriating.

    I think it will take a fair time for the reevaluation of PACE and the implications to permeate to GP's.

    Hence why all this awareness is so important.


    B
     
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